Connie's Heart Valve Journal

It has been 20 weeks since surgery! Friday will be my last day of rehab. I remember Denise K telling me how sad she was when rehab came to an end. At that time, I just could not relate. But today as I was completing my "exit papers"...I too started to cry...I will certainly miss my mornings with my 78 & older crowd. They make me smile...inside & out! :) I have the option to continue the program for $65 a month...but right now..I also work out at the associate center at Honda where my husband works. We live a mile and a half from the plant...so it is hard to justify driving into the neighboring town & paying the extra money. (our fee for the associate center is quite a bit less for the yr)..
I saw the cardiologist the other day. Heart sounds good...with an "exceptable" leak. I still struggle with shortness of breath, but it has improved considerably since my "critical days". I hope as I continue to push myself with the cardio, that one day it will be completely gone! Still continue with pain when sneezing or coughing...and the chest crunching when I move...sometimes drives me crazy. I still continue to see a neurologist for loss of eyesight in my right eye that I experienced, per the recommendation of my cardiologist. I will see him next week for the results of all my testing & hope I can say goodbye to him forever! But the most annoying thing is.... the difficulty with the memory & spelling....Oh my goodness....(hopefully, one day I will "forget" to be annoyed too. LOL)
As I look back on my surgery.....I think the worst part was the shock of finding out I had BAVD. ( As most of you now know...the actual surgery is just not that bad) But because of Adam's wonderful book & this fantastic site...I was prepared for surgery... I was not afraid...I was probably the most calm I have ever been being wheeled into that OR...it was truly strange...like an out of body experience. As for the recovery, I think the worst part was the conflict my mind & body continued to have. My mind kept telling me to "carry on" as I did 1 year before the surgery...but the body just seemed "to keep the brakes on"!! The fatigue, was overwhelming at times. I was not a napper before surgery...but after....well...that was another story! lol....but it helped me heal...and just a part of the process.
For those of you still waiting for surgery....as others have mentioned....some days you will look at your scar and say.."oh yea...I had OHS"... it is truly amazing what cardiac rehab does for the heart...and mind! Once upon a time...I thought my diagnosis was a death sentence...but instead...it actually was a blessing. I have met so many wonderful people on my journey...I have a new appreciation for the sights & sounds around me..and I have learned not to sweat the small stuff......life sure has its "bumps in the road"...but thank goodness you all were here to help me with this one!!!

I can't believe I just wrote 12 weeks.. Holy Smokes..seems like a lifetime ago someone opened the door at CCF & let the Amtrak roll right over me! LOL... honestly...the surgery itself...as most of you know...is not that bad.. Yes..the first 2 days wouldn't make my top 10 list...but hey...small price to pay for a new shiny AVR! :)
I have been in cardiac rehab for almost 4 weeks. All is going well there. I can tell I am getting stronger...I am still the youngest...until just recently, I was the only female!... I opted for the 7:30am class so my classmates are the 78 & older group. Most retired farmers who teach me everything about the grain prices, yield of corn per acre (which is about 5 1/2 bu) & how to control my coyote problem should I ever have one...(live in town..so far...hasn't been a problem). My favorite "classmate" is Cliff. He reminds me so much of my Dad who passed away 5 yrs ago today). Little Cliff tells me the same story EVERYDAY about his brothers back surgery. As Cliff & I sit side by side..tackeling the "arm crank" he describes in detail (as he knows it) his brothers surgery...I listen carefully, smile politely, and thank God Cliff's brother didn't have a vasectomy! LOL... but honestly....it is the highlight of my day! (I know, I know...I need to get a life huh?)
I am still under the care of a neurologist... I have had a MRI, CTA scan & will soon have an EEG. ugh. the cardiologist was concerned about the loss of sight 3x in my right eye as well as double vision, dizziness, & the ocular "events". Anyway, I tried to tell them both how others here @ HVJ have had similar events, but all felt it was necessary to rule "things" out. Oh well..better safe than sorry. I did go for my yearly check up with the eye doc.....he did say I had a significant change in my right eye (I could tell) than I have ever had before. Been going to this office for 38 yrs. So the "event" left its mark, I guess. He told me it makes no sense to him, that I would have vision problems after my AVR...duh??? I tried to explain the similar events of others @ HVJ to him as well....OMG...& he was having none of that!! ..so out I went....thanked him for his time & my new glasses.. & determined to make this my last visit with him!!!
But the great news is....Saturday we leave for San Diego for a real vacation to see my son. In Feb, while in the hospital for knee surgery, and they told me I had a bad valve.....I wondered if I would ever travel anywhere again...much less fly to CA to see my son. My husband & I enjoy traveling so much...even on short weekend trips...but because I have had two major surgeries this year....and everyone wants paid (lol) this will be our first vaca this year! I can't believe going on vacation can make me feel soooo "normal" again. I am so sick & tired of being a "patient"! The rehab nurse warned me that if I stop rehab for 1 week the insurance may not continue to pay for my rehab when I return. I told her..."too bad"... I am soooo going...and if they refuse....I quit... I will go to the gym & finish my rehab on my own. (I go to the gym on the days I am not in rehab)... I think she was a little surprised by my response...but hey....you would think she would know better than to get between a mother & her cub!.... LOL..
For me, the hardest part of my journey thus far has been mental. As determined as I was not to fall victim to cardiac depression...I did. I think my knee played a big role.... I struggle everyday to stay positive & pray for guidance as I continue my journey. This vacation is a big part of my mental healing. To feel normal...and actually BE normal...and not just be a OHS patient who still sleeps with 7 pillows & still has neck & sternum pain. For a whole week....I will be Mike's mom...who meets his friends in Old Town San Diego for Taco Tuesdays.... walks on the beach at the Hotel Del...rides the trolley down to the Gaslamp district.....maybe enjoys a meal at Roy's...and just be normal, yep, boring ole NORMAL ME....yippeee!

Arrived this morning and Connie was on bedrest. Her chest tube was not working correctly. NP came in around 9:15 am and removed it. They took some x rays and have been monitoring her condition. Going to have another ecko later. She has been walking some and continuing her breathing procedures. Is resting now and going to be eating soon.

Connie is doing well. Here doctors and nursing staff are taking exceptional care of her. Her pain is controlled and she is resting comfortably. Her pulmonary tests are going very well and her vitals are in a good range. Her surgeon was in this morning and said she looks good and may be able to leave sometime over the weekend. She has one more drain tube to be removed. Katie stayed until 6:30 pm last night and Mike left around lunch time today and is flyng back to San Diego. I think them being here, along with the support from her HVJ friends really helped her get through this like she did. I was able to have Connie read some of your comments today. She is very grateful for your support. Denise K and her husband Ric stopped by earlier for a visit. We enjoyed meeting them and hope to catch up with them again once Connie is feeling better. Thanks again everyone. I believe Connie will soon be able to update her status before long. Dan

Conni­e is out of CARU, chest tubes removed, and in room J63-1­0. Looki­ng good and has a great view of downt­own Cleve­land. Will updat­e more later­. She appre­ciate­s all the well wishe­s and praye­rs. Thank­s every­one. Dan

Connie had one of two tubes removed at 8 am today and has already been up sitting in a chair. The nursing care is amazing and they really keep an eye on our little rock star. I told her about the comments HVJ friends made and she appreciated them so much. Thank you for keeping her in your prayers. I told her about the cheer Linda came up with and she is looking forward to reading it. Thank you to all who sent their well wishes and prayers. I am attending a class at 9 am that explains how to transport your patient home safely. Connie may be able to respond on the journal later today or Thursday. Until then we wish all of you the best and will pray that Summers surgery will go as well as Connies did yesterday.

Connie was moved from ICU to step down unit and already had her breathing tube removed at 2:15 pm. The kids and I just saw her. Today, visits are limited to no more than two people and stay no more than ten mins each hour. She looks good but is in quite a bit of pain. There is one nurse monitoring her care while in CARU. She should be moved to her own room tomorrow and continue her recovery. Thank you to those of you sending comments for prayers and support. I told her she had a number of her HVJ friends asking about her. I even saw a little smile.

This is Connies husband, Dan. Katie, Mike, and I just left her as they took her to pre-op. She was in good spirits and was looking forward to getting this done. It will be about two hours before her surgery. The nurse should be able to give us an update around 9 am. I am so glad there is a blog like this for her to learn from others going through similar circumstances. She reads them constantly and tells me about some. Thank you for being there and keeping her and the rest of us in your prayers as she begins her climb. I will keep you posted until she can do it again for herself.

Today was a very, very long day of pre-op testing! Glad that is over! We met with Dr Svensson. We were very impressed with his knowledge and confidence. All I could do was stare at his hands! In just a few short hours, this man would be stop my heart, then slice into it. Wanted to be sure he had steady hands. All good there! :)
Daughter Katie & son Mike both came in town around 6pm. We had a nice dinner and they presented me with a gift of a double heart necklace. The plain silver heart represented my old heart...the diamond heart signifies my new and repaired heart. It was so touching. I will cherish it always!
I was lucky enough to get the first surgery...yippee...no more waiting....I am sooooooo ready!. I go into that OR tomorrow with thoughts of all of you, who have went before me....and given me the courage to do this without worry. I will also have many angels with me.....I predict "standing room only" in that department....and of course the love & prayers of all my family and friends...old & new....thank you so much!
Please keep my family in your prayers as well...tomorrow will be a long and tough day for them....I get to sleep through it....:):)
So I am off to climb my mountain....affectionately known at our house as "Good Golly Mountain"....see you all on the other side

Yes....still stayin positive!! I owe that all to you here at HVJ. Your encouraging stories and great feedback have brought me to my "place". I will be enternally greatful!
I am able to look ahead to the future. I see myself healthier than I have ever been. I also see an appreciation for life that I have never felt before. So is OHS a "curse".. I think not! It as you all have made me see.....a 2nd chance....a real "do over" to get things right. I hear that little voice inside telling me how lucky I am for such an opportunity....no longer the "average joe" walking down the street...sweating the small stuff!... My prayer is that every patient facing OHS stumbles on this wonderful site....to meet great people like you all....who have walked the walk...shared your stories....encouraged the scared to death (me)...and set the example...of a healthier, happier, active life after OHS!
Before I was told I needed surgery "soon"...we purchased tickets to San Diego for September to visit my son. (no won't be stayin at the Hotel Del...but that IS on my Bucket List..lol) I really thought that vacation was not going to be possible for me....infact, thought it would be months & months before I could even think about traveling ANYWHERE....but after the "journals" I know I will be boarding that plane...I know there will be many travels ahead....and I will feel a lot better than ever before doing my favorite things.... Thanks again, guys for sharing.... IT'S ALMOST MY TURN!!! YIPPEE

This time next week I will be in Cleveland, pre-op tests Monday....surgery Tuesday.. so hard to believe it is almost time...

I was wondering if anyone had the patch for nausea put on in surgery? (it is placed on your neck) They were suppose to do it for my knee replacement..and "forgot"... Of course, I was sick, but wasn't sure if it would have worked anyway. Someone told me they used it on her @ time of knee replacement & it was wonderful....helped her so much. They have given me injections & also oral meds for the nausea with other surgeries, but was hoping I could avoid all that if the patch would work.
In regards to CCF, for those of you that were there before me, did your family complain of it being cold? On a few journals I have noticed some complain of the temp at other hospitals. Just wanted to make sure my family had sweaters or hoodies to wear if temp was a problem. I know it is hard to think of packing sweaters when it is 100 degrees outside! lol

I still continue to get strength from your experince of recovery & life after the "big day". I am not sure where I would be today had I not stumbled on this site several months ago.....one thing I know for sure.....I wouldn't be ready for "mountain climbing"!!! Thanks to everyone who continue to post and give us a window with a view to the healthy life ahead....

Hello Everyone...
I have just a couple of questions (right now anyway)

The other day I set up an appt with my cardiologist for my follow up after surgery. The receptionist told me he does not like to see patients until 1 month after surgery. That was a little shocking to me...since this is my 12th surgery....and ALL the other times I had to go back to the doctor for an incision check two weeks after surgery date. This concerned me a little.....is this the norm???
Next....my last surgery, just 5 short months ago...the doctor set up home health care for me for a whole month....granted....by the journals I can see that is def not necessary to have a Physical Therapist, or occupational therapist.....but what about the visiting nurse??? did you all have one??? if so....who wrote that script.....surgeon or cardiologist?
I am sure there will be more questions as surgery date gets even closer! (7/17/12)...two weeks....Oh My! :)

CCF called yesterday...said they reviewed my records and Dr Svensson said.."Let's get this scheduled"...so schedule we did...for July 17th!! But I mean to tell you...when I hung up that phone I was sucking air!!.. I am sure you can all relate. The emotion of excitement & anxiety, all at once, was almost too much!... It took a few moments "to regroup".

It was hard to sleep last night......thinking about recovery. My son lives in beautiful San Diego...so I thought to myself.....perhaps I should book a room at the Hotel Del for a month....walk on the beach...listen to the sounds of the ocean...drink decaf coffee on the veranda....and really enjoy some of this "down time". Think my husband would mind cashing in the ole 401K to accommodate my plan????.....Oh well.....in all my other adventures with this thing ...recovery......I have found "there's no place like home"........ sooooo....instead of beautiful views....perfect weather....daily visits from my son....I will gladly settle for sitting on my patio....looking over the corn...to see HONDA MFG in the distance......and be taken care of by the "other" man in my life.....a great husband!!

For a few months now I have been a HVJ stalker. (not as long as DVB tho)...lol... I have been reading and absorbing everything I could about your experiences with OHS. I have read your stories, viewed your pictures, cheered at your triumphs, prayed when it was "your turn", took notes on what to take to the hospital & have at home, chuckled at your description of hospital food, laughed out loud when you "dropped trou", smiled as you boarded the plane to SC, held my breath @ your "re-do", and cried like a baby the night I read of Cindy P's passing!

I have learned so much reading your journals....researching your suggestions and finding comfort in your success with your own OHS. It is now time to start my own journal as I begin my "climb" & join this club of the "elite" (which none of us wanted to be a member)....But one thing I know for sure....I wouldn't want to start this journey without the understanding & compassion of fellow HVJ members!...the support you have given one another is like no other "club" I have been involved with.....I, like all of you, can't thank Adam enough for his wonderful book...and this truly amazing site!!